My children were both diagnosed with Autism Spectrum Disorder within a 2 month period. Gray was diagnosed just before he turned 4, and Hope was diagnosed 2 days before her second birthday. In the blink of an eye, the trajectory of our lives was utterly altered.
We were plunged into a world of special education with our local school district (Gray) and 35 hours a week of intense behavior, speech, occupational and physical therapies for Hope. I was reading as many books as I could about autism, but many were contradictory and I was on information overload.
Brad and I had to rely heavily on the advice of the professionals who were working with the children. Please understand that I have nothing but respect for the men and women who worked so hard with my babies. At that time, Hope was almost catatonic, and without their help and their guidance through intense intervention I don’t know if we would ever have reached her.
But make no mistake, it was a gut-wrenching process. Hope hated therapy, it was horribly hard for her. Little by little, my daughter emerged from within and began to interact and communicate with us. And I was so glad I hadn’t scooped her up and run away from those therapists when it was so excruciating for me to see her so unhappy.
Because I could see that she was benefiting from something that was so uncomfortable, I began to doubt my own instincts. When we had a problem with her, it was discussed by the therapists as being “Undesirable Behavior.” And we needed to come up with a plan to extinguish this behavior.
I totally went along with this. After all, I had seen how far she’d come and how much progress she was making, and I trusted the experts. When we transitioned Hope from her crib to a bed, chaos reigned. The first night, we woke to find her sitting in the bathroom sink, making faces in the mirror and babbling to herself. She loved her new freedom!
The next night, she wandered the halls of our home until we tucked her into bed with us. She took to that like a duck to water, but it wasn’t a great long term solution. So I spoke to the behaviorist at her school, and we devised a fool-proof behavior plan to extinguish the undesirable behavior.
The plan was that we would put her back to bed without speaking to her or making eye contact so that she wouldn’t get attention or have an emotional payoff. Eventually, she would learn that she needed to stay in bed, and the battle would be won. Game on!
That night, we put her to bed at 8, she was up at 8:01. And 8:02, 8:03, 8:04…It didn’t seem to matter that we weren’t giving her eye contact or speaking to her, her emotional payoff was the sheer joy of seeing us and being guided back to bed. Finally, at 11 PM, she passed out in her bed. We were victorious!
Until 1 AM, when she woke and we began the process all over again. As soon as she was back in bed, she bounced up and came running out the door to find us. What a super fun game we had created! And we got to play it until 5 AM, when she finally fell back asleep. She got a couple of hours of sleep before school, but Brad and I had to start getting ready for the day. We were complete zombies.
However, we were determined zombies. We were going to win this war and extinguish this undesirable behavior. It didn’t stand a chance against us! So that night we began the process again, and the night was pretty much a repeat of the night before.
By now, I was weeping with exhaustion and Brad had lost the ability to speak in sentences. We couldn’t face another night like the last 2. And yet, Brad had to go to work, I had to drive to various therapies and we still had to parent both of our kids. So on the way home from preschool, I purchased a baby gate. Brad installed the gate, and we put Hope to bed.
We had ruined all the fun for her! She stood at the gate and yelled, sang and banged things, but we were too tired to get off the couch. We knew she was safe, so we just let her do her thing. She continued until about 10:30, when she finally fell asleep on the floor next to her bed and slept through the long, blissful night. Never has sleep been so sweet!
At preschool the next day, the behaviorist asked how the plan was going. I shamefully mumbled that we had purchased a baby gate, and filled her in on the nights before and our desperation. She urged me to take down the gate and re-implement the plan, and I told her it wasn’t going to happen. She was very disappointed in Brad and I, but the lure of sleep vs. child herding was too much of a payoff for me. I persisted in MY undesirable behavior, and the gate stayed.
Within 2 nights, Hope stopped getting up at all and just stayed in bed and went to sleep. The game was no fun with only 1 player, and eventually we didn’t even need to close the gate at bedtime. Good habits had been established. While Hope has had difficulty with staying asleep, we have never again had a problem getting her to go to bed and stay in bed.
So here’s the thing: there are truly some very undesirable behaviors and they most definitely need to be extinguished. Sometimes it’s a matter of safety or long term quality of life, and it’s important to address those issues and put the hard work into helping children to achieve their best potential, and we’ve done that a lot of the years. Because sometimes it really, absolutely matters.
And it’s also important to listen to the therapists and behaviorists who have put countless hours into studying and truly have a desire to help. Often, even most of the time, they have great advice and will help you through some truly difficult situations.
But don’t forget you’re the parent, and you have to decide whether your family as a whole can live with the consequences of a behavior plan. Sometimes, it’s enough just to manage an undesirable behavior and save your strength. If parents of toddlers without autism need a baby gate to keep their children safely in their rooms, it might just be a little much to expect a toddler with autism to master this skill. There’s a reason these gates are manufactured by the thousands!
So buy your toddler gates, your TV guards or whatever keeps your kids safe and your family sane. You have a limited supply of strength and energy, so use it when it really matters.